Officially Tweeting....

In an effort to get more people aware, and hopefully get more funding... BHB is now on Twitter! 

I have been wishing so badly lately that I could help families affected with Blounts Disease. Wouldn't it be nice if these parents could take their children to any doctor they want to get the help that they need? What is those same families were able to get braces and other treatment for their kids right away? Or help with physical therapy? If BHB had the funding, these are the things I would like to help with.  

It is my goal that within the next six months, BHB will have a non-profit organization status. I also want to have a new website that is more efficient so that everyone can find the information that they need and really be a sounding board for each other. I KNOW these things will happen; it just takes time and hard work!

So if you are on Twitter.. make sure to follow Ben Has Blounts!

http://twitter.com/#!/BenHasBlounts

Ben's Sixth Physical Therapy Appointment...

After an extremely long night of sleeplessness thanks to Ben.... we went and saw Lisa yesterday. Ben was quite uncooperative this go around. Of course I suppose that is what happens when a two year old wakes up at 3:30 in the morning!

Finally, after using a sucker to bribe him with... Ben started walking the hall so that Lisa could watch his legs. I was really hoping to get rid of the Thera Tog on his right side.... Even though it has done wonders for Ben; he seems to mind it a little more now. Instead, we decided to use a longer strap to wrap around his leg and keep it "out toe". We also added a Thera Tog hip strap to Ben's left side. Its a little tricky with the KAFO... But I am really glad that this hip strap will help with the rotation issue I have been worrying about with Ben's left leg.

Lately, it seems like when Ben isn't wearing his braces, he is ready to trip over his feet again. It makes me really sad to see him get back to this point. At the beginning, all we did was address his in toeing and his gate. We didn't have the KAFO brace, just the Thera Tog. Now that we are using the KAFO, his bones are looking better, his leg is straighter; but his rotation is taking steps back. Its a very frustrating time in Ben's treatment. I haven't met another person who has used the Thera Tog to treat Blounts Disease; so I'm not sure if this is a common issue or not. I guess I'll pave the way!

I also wanted to let everyone know, that the metal in Ben's KAFO is starting to make holes in his pants. I usually just put him in sweats so that it is comfortable for him. So if you are on your way to getting a  Blounts KAFO; I would recommend cheap pants and iron-on patches for the inside of the knee area.

This Is a video of Ben walking without  the strap on his right leg...

This is a video of Ben walking with the strap on...

The difference is subtle; but still a difference. We chose to keep the strap on to help with the rotation of his right leg. He also has the hip strap on his left leg (the leg with the KAFO) which is helping with the rotation of his right leg.



Has anyone heard of the Eight Plate? If you have any experience with this surgery; I really would like to hear from you! Please email me at

BenHasBlounts@gmail.com

Help With Your KAFO...

We have been very lucky that we haven't had any problems with

Ben's KAFO Brace. However, there are things that can happen that you should

be aware of. Here is a useful list of guideline's and things to watch for:

Tips and Problem Solving

• The KAFO should always be worn with socks and

shoes and also some type of fabric over the leg to

serve as an interface between the leg and the

KAFO to improve comfort and wick perspiration.

• The best type of shoe to use is a basic gym shoe

with the laces or Velcro extending well down the

front of the shoe. This provides adjustability and

allows the shoe to accommodate the added

dimension of the device in the shoe without having

an excessively large shoe on the opposite foot.

Gym shoes help to encompass the foot and to

secure the KAFO. Dress shoes and sandals are not

recommended for these reasons.

• If you notice red marks, bruises or blisters on your

skin, discontinue wearing the KAFO and call your

orthotist to schedule an appointment.

• If you have any problems or have questions, please

contact your orthotist.
 
 

 

I found this list on http://www.cpousa.com/cm11.pdf

 

There is a lot of helpful hints and information. I would suggest reading as much as you can before starting the

 

KAFO Brace; and make sure to have a good relationship with your orthotist! You will need them in case

 

there are any problems.

Now On YouTube...

I wanted to make it easier for everyone to find all of Ben's videos. So 'Ben Has Blounts' is now on YouTube! We have our very own channel that I will update as we make more videos. If you have any videos that you would like to share, you can send them to me at BenHasBlounts@gmail.com... I would be glad to add them to the collection. I think it is beneficial to take pictures and videos throughout treatment so that you can look back and see the progress being made. I also think that it is a good tool to use to show your children that they are not alone... there are other kids going through the same thing.

Here is the link to BHB's YouTube Channel...

http://www.youtube.com/user/BenHasBlounts

In the future you can access the site by searching for "Ben Has Blounts" on YouTube, or by looking under the 'Connect With Others' tab on the BHB Blog.

Ben's Third Appointment With Dr. Deering...

Today we went and saw Dr. Deering, who is his Orthopaedic Surgeon. She really wanted to see Ben walking with his braces on to make sure he was handling it well. Of course, he did awesome! We talked a
little about his rotation, and I showed her pictures. In her opinion, this is just part of it. There isn't really anything we can do about it right now. It was nice to hear that she has been to BHB, and thinks it's wonderful! We will go back and see her in 3 months. At that time we will have more xrays done to see how his bones are, and if the Blounts Disease is worsening. Here are a few pictures from our visit...



In Dr. Deerings Office... Waiting




Happy Boy!








After we got home Ben was in a pretty good mood. We went out back to play. I decided to take a short video to show everyone how well Ben gets around in his braces. It's one thing for me to say he does... quite another for you to see it yourself!

Our next appointment for Ben is next week. He has Physical Therapy with Lisa on the 24th! 

Gearing Up...

Ben has an appointment with his Orthopaedic Surgeon in a few days. I'm pretty sure that she just wants to watch Ben walking with his braces on to see if he is improving. I'm pretty sure there aren't going to be any xrays. Hopefully, we will have good news! I am a little concerned with Ben's rotation. Without the Thera Tog on his left leg I think it may be getting worse in some area's. It seems that his left knee it really facing the wrong direction. I don't know if this even is a cause for concern. I really wish I had taken stand up pictures when we were first diagnosed so that I could compare them.



The Rotation of the Left Knee

As for the Blount's Disease in his legs; some days he looks awesome, and other days it is more obvious. When I look back at old videos and pictures; I can really see the difference.

I will be sure and give an update after we hear what Dr. Deering says.

Remember to take pictures! They will come

in handy... I promise!

Keep Those Braces On!

During my research lately, I have been coming across a ton of posts by parents asking how to keep leg braces on their kids. I also had a mom ask me how I keep Ben from taking his off. I know how difficult it can be; so I thought I would give us all a little pep talk!

Don't feel guilty that you aren't doing enough! We all want the best for our kids and it can be SO hard to stay motivated. Especially when your child doesn't want to wear the braces. When Ben was only using the Thera Tog brace I would wake him up from nap a little early so that he was still sleepy and wouldn't fight me. I have also used cookies, suckers, videos on my cell phone... all as bribery to get him to hold still! I really saw a change in his defiance after I was more consistent with putting them on. Now he knows what I'm doing; and he even tries to help.

I think with younger kids, like Ben, it is easy to make up a song, or go through the steps in an enthusiastic way... "Let's put on the BIG sock now!".... "Push your foot in!"... "Wow you are tough".... With older kids however; I can imagine it being more difficult. Ben has two older sisters; so I am familiar with compromise! Here are some ideas you can use to get your older kids on board with the braces:

~ Let them pick out a family movie for everyone to watch...

      "You were such a big kid with your braces today, YOU get to pick out a movie!"

~ Pick an activity for them to do "brace free"...

      "Keep your braces on all day, and then on Friday, we can go to the park with no brace!"

~ Go to the store and pick a special craft, or start a reward chart

~ Show your child videos of other children with braces, let them know they are not alone

~ STAY POSITIVE!

These might seem like little things, and they are... but to a child, positive reinforcement is the best way! I would also hold your ground; don't ask if they will put on the brace; tell them they need to. This is just a part of life... If you aren't upset and frustrated; and you are confident, they will be too.

If you have a few bad days, don't dwell on them! Everyday is a chance to start over...Guilt will help no one. If you still can't get your child to keep the brace on, you might try vet tape. It's sticky on one side, completely flexible; and is safe to use over any type of leg brace. You can find it at feed stores and most medical supply shops. Here is a link to buy it online...

http://www.amazon.com/3M-Elastic-Adhesive-Tape-Inch/dp/B003IYGS24

I am positive that if I can keep Ben's braces on... You can do the same with your child! Don't give up!
Keep those braces on!

Ben during nap... wearing his braces. Thera Tog on the right leg and the KAFO on the left

How do you get your kids to keep their braces on? I'd love to hear your ideas!

Misconceptions...

For a few months now, I have been reading everything I can on Blount's Disease. Some things, I don't fully understand; thanks to the medical jargon... But I think I know quite a bit!

It is upsetting to me that when most people read something on Blount's Disease, they automatically assume that your child is obese. I honestly think that for the average person to read a medical definition of Blounts, is probably confusing... perhaps finding words in that definition that are more common, such as "obesity", the general public think that this disease is caused by "being fat"... All of us who have personal experience with Blounts know different!!

It is true that the deformity caused by Blount's Disease is due to the weight baring on the bones. For most people this is fine; but with Blount's kids... the bones don't handle it well, and they start to deform.

Another misconception I have come across is that during pregnancy, there may have been a deficiency in nutrients. This is also, not the case!

I have found some studies linking a chromosomal abnormality to Blount's Disease. Nothing decisive as of yet; but I think it is interesting; and I hope that someone somewhere does a study to look further into this possibility. I am confused though that some medical websites say that it isn't hereditary, but that it is genetic... Hmm...

Definition of GENETIC : Genetics, in biology, the science of genes, heredity, and the variation of organisms


Genetic, used as an adjective, refers to heredity of traits

CONFUSING!

So much about this disease is confusing. It doesn't seem like doctor's and patients are on the same page. A lot of the medical professionals writing the "definitions of Blount's Disease" aren't even on the same page as Ben's Orthopaedic Surgeon. Basically, what I have been told by our doctor, whom I LOVE, is that with Infantile Blount's, it is not due to obesity, it is not due to poor nutrition, and it doesn't seem to run in families.

What I know for sure:

~ Blount's disease is pro dominant in African Americans

~ When caught early, most kids will not have long lasting effects

~ Blounts is so rare that most pediatricians don't recognize that not all children grow out of bow legs and in-toeing... Most pediatricians don't even know what Blount's disease is!


As parents we are our child's best advocate... we know when something is askew. Keep fighting for your kids! Network, and get the information that you do have out there!

***Please note that I am not a medical professional; and that these are just my personal opinions***

Making Connections...

The reason I started documenting Ben's journey with Blount's Disease was so that I could make connections with other families and people affected by Blount's. I am SO thankful for the connections that I have made; and I believe that with more time, there will be even more friendships because of BHB!

I wanted to share with you a few of the wonderful communities I have found online. Although I have not talked to anyone else on these sites...YET... it's good to know that they are available. I would encourage anyone who has been affected by Blount's, or any other disease, to look at these sites and start connecting with other's.... Everyone has something in common! Everyone on these sites is looking for another person to share experiences with, or ask questions. 'Ben Has Blounts' has a profile on each of the sites listed under the "Connect With Others" tab. Let me know if you have any questions, or you need help! Let's start networking! If there is a site you think would be helpful, please email me at BenHasBlounts@gmail.com ... I'd LOVE to hear your ideas!